Patients with unmet needs will continue to increase as no viable nor adequate treatment exists. Meanwhile, healthcare systems are struggling to cope with the rise of patients with chronic diseases, the ageing population and the increasing cost of drugs.
What if there is a faster and less expensive way to provide better care for patients using the right digital solutions and transforming the growing volumes of health data into insights? The increase of digital health has grown exponentially in the last few years. Why is there a slow uptake of these new digital solutions in the healthcare and pharmaceutical industries? One of the key reasons is that patients are often left out of the innovation process. Their data are used without their knowledge, solutions designed for them are developed without their input and healthcare professionals refuse their expertise. This book explores what it means to empower patients in a digital world and how this empowerment will bridge the gap between science, technology and patients. All these components need to co-exist to bring value not only to the patients themselves but to improve the healthcare ecosystem.
Patients have taken matters into their own hands. Some are equipped with the latest wearables and applications, engaged in improving their health using data, empowered to make informed decisions and ultimately are experts in their disease(s). They are the e-patients. The other side of the spectrum are patients with minimal digital literacy but equally willing to donate their data for the purpose of research. Finding the right balance when using digital health solutions becomes as critical as the need to develop a disease-specific solution.
For the first time, the authors look at healthcare and technologies through the lens of patients and physicians via surveys and interviews in order to understand their perspective on digital health, analyse the benefits for them, explore how they can actively engage in the innovation process, and identify the threats and opportunities the large volumes of data create by digitizing healthcare. Are patients truly ready to know everything about their health? What is the value of their data? How can other stakeholders join the patient empowerment movement? This unique perspective will help us re-design the future of healthcare - an industry in desperate need for a change.
Author(s): Disa Lee Choun, Anca Petre
Publisher: Routledge/Productivity Press
Year: 2022
Language: English
Pages: 226
City: New York
Cover
Half Title
Title Page
Copyright Page
Dedication
Table of Contents
Foreword
Preface
Acknowledgements
Notes on the Authors
Chapter 1: The Patient Empowerment Movement
From a Doctor-Centred Model to a Patient-Centred Model
Setting Rights, Sharing Knowledge, Defining New Rules
The First Patient Movements
Reducing the Knowledge Gap
Creating a New Doctor–Patient Relationship Framework
Reaching the Mutual Participation Model
From Informed Patients to e-Patients
Equipping e-Patients
e-Patients Break the Status Quo
From Health Literacy to eHealth Literacy: Opportunities and Challenges
The Complex World of Health Data
Notes
Chapter 2: From Raw Data to Insights
Overview of Health Data Types and Sources
Electronic Health Records: The Main Source of Health Data
Medical Data Is Not Sufficient to Understand the Human behind the Patient
What Is Big Data and Where Does All This Data Come From?
What Are the Key Steps in the Data Value Chain?
What Is Raw Data?
What Is Value Data?
Who Are the Key Players?
Where Do the Patients Come In?
What Are Some of the Challenges of This Value Chain?
#1 Trust
#2 Inequalities
#3 Heterogeneous and Multi-Dimensional
#4 Autonomous Sources with Distrusted Control
#5 Complex and Evolving Relationship
#6 Skilled People
Addressing the Obstacles of Big Data in Healthcare
Storage
Governance
Interoperability
Security and Privacy
Where Does Ethics Play a Key Part?
Open Data, FAIR, and TRUST Principles
What Is the Right Type of Data Governance?
What Standards Are Needed?
What Should the Health Data Value Chain Look Like in the Future?
What Is the Patient Data Ecosystem?
Notes
Chapter 3: The Value of Health Data for Patients
How Do Patients See Their Health Data?
Patients Are Overall Open to Sharing Their Data…
…although They Understand the Risks
Principles of Safe Data Sharing
Whose Data Is It Anyway?
Own Your Data to Keep It Private
The Shared Ownership Governance Model
The Social Licence to Use Data
Trusted Environments
Patients Are Not Cash Cows
The Social Vision
Tech to the Rescue
Blockchain, a Tool for a Shared Ownership Governance Model
Health Data as NFTs
Privacy-Preserving Technologies
Advancing with Purpose
Notes
Chapter 4: Applications of Health Data
Applications of Health Data
Why Is It Important?
Researcher
Disease Identification and Diagnosis
Digital Therapeutics
Personalized Treatment
Drug Discovery
Clinical Trials
Comorbidities
Society (Healthcare System)
Hospital Performance, Planning and Management
Pandemic and Epidemic
Improving Medical or Healthcare Services
Substance Abuse
Diagnosis Using Imaging Technologies
Training Physicians and All Healthcare Providers
Insurance
Patient Engagement
Citizen (Patients)
Improve Disease Management, Quality of Life, Health, and Wellness
Preventing Medication or Treatment Errors
Early Diagnosis of Potential Disease
Reduce and Prevent Fraud
Patient Engagement
How to Create Incentives for Patients to Share Data
Notes
Chapter 5: Data-Driven and Patient-Centred Health Systems
Health Data Availability and Use across the World
The Swedish National Diabetes Register
Israel: Data vs. Vaccine
Data Sharing vs. Data Privacy
Creating a Fully Digital Democracy: The Example of Estonia
How France Redesigned Its Digital Health Roadmap from the Ground Up
The Data-Driven Danish System
Notes
Afterword
A Look into 2050
Index
